Hi, I’m new here, a 51 (seriously?!) year old who’s had MS since 2003. I moved to Spain for 5 years and almost forgot I had it. Then I moved back to damp Britain and it got worse. First one stuck, then two, now I use a rollator or mobility scooter. My son is 15 so I’ve almost fulfilled my commitment to seeing him through school, and he stays with me half the time. Apart from that my life is quite boring, but I feel there might be more to live for. I used to party a lot, I worked as a TV camera person and for a circus. So what now? Most of my friendships have faded away. I read books and listen to music. And meditate. But I feel there can be more, and reaching out to others with MS feels really important now. So hello!
I have a dog who I take out for walks daily, but there’s another bit of my brain wanting stimulation.
I’m single and used to hate that, but I’ve grown to quite like it.
Hello @tomshillington
Welcome. I’m 43 and in the 20+ years of multiple sclerosis club too.
I’m not suprised your MS kept relatively quiet living further south, personally I’m convinced there’s a link between the disease and living further away from the equator, apparently Sweden has the most MS sufferers in the World.
Kinda wish I emigrated south back in 2003 when MS was fairly new to me, I think I’ve now reached the recurring infections phase of this rotten disease, so just hoping for a mild winter this year.
With disability becoming more of an issue for me, my circle of friends has mostly disbanded, “birds of a feather flock together” so they say.
Hope you get to make some new friendships, regards,
JP
Thanks for your reply.
Yeah, it’s a weird one with friends. I think it’s partly because they are fearful of getting old, and we remind them of how it can be **** (edited by moderator). And partly people are generally just really busy trying to hold it all together.
I do find it makes me stronger though. But I definitely have bad days (mentally, this disease can be exhausting - but hey, at least we’re not Swedish!)
I hope you’re having a ‘reasonable’ day, and thanks again for your response. 
Tom
Looks like you got moderated there 
, I’ve only been moderated once b4, I think I said something along the lines of “I’d prefer to have an ice shower than ice bath tbh” when someone asked if taking one helps with MS symptoms. 
*Danger of cold water shock, if you’re not used to it.
Being ill-health retired now, all days just seem to be daily routine, with not much happening most of the time tbf. 
JP
Hi JP.
Yes, looks like I got moderated.
I like cold showers but don’t go for ice baths. Am I allowed to say that?! I do swear a bit more now I have a teenage son, but will rein it in.
This is the first year I’ve called myself medically retired, how do you find saying that at your age? I’ll put in the swear words! What did you do before MS? I used to be a tv camera person. Or cameraman in old money. My first symptoms were eye and balance problems which made that hard.
How do you pass time? I read and listen to music mostly.
Tom
Same as me, MS usually starts with the eyes. 
I read and like music, were you a cameraman at the Beeb? I used to go and watch Top of the Pops, back in the day. 
If asked what do I do now, I would just say I volunteer some of my time to charity when physically able, which is true. What’s with this new government frowning on those who are not “working people”, it is still work albeit unpaid.
And rather than saying I’m a pensioner, I’d say I’m a superannuationary, I mean who knows if there will still be a state pension and the age you qualify will be in the future?
JP
So, hello Tom. I’m 70! How did that happen, it was only yesterday that I was in my early 50’s and retirement was something that ‘old people ‘ did.
I used to spend a fair bit of time doing Future Learn courses - online courses ranging from a few weeks to months. I did things I was interested in and the way Future Learn works you get to share comments, thoughts etc with fellow learners. I might start again this winter.
I once had an idea that I would go out and about on my mobility scooter taking photos. I do that a bit but nowhere near as much as I thought. Being a ‘birder’ and having an RSPB reserve not far way entertains me and one of these days I might manage to photo the elusive Water Rail.
Before retirement- quality enhancement of higher education. Sounds boring but was actually quite interesting- basically supporting Universities in sharing and learning from best practice around the UK and internationally .
I agree on the friends front. MS is like getting old early, and our premature decrepitude reminds them what’s around the corner for them, doesn’t it? Not a very attractive prospect! Some people are better than others at dealing with that.
A superannuationary, I like that! I’m not ready to say I’m a pensioner yet. I was volunteering as a counsellor, maybe I’ll try that again?
I was freelance so I worked for anyone who would pay me. Beeb, MTV, Discovery, to name but a few. What did you do pre-superannuation?
Hope you’ve had a good day. I went out on my scooter and walked my dog and I missed the rain.
Tom
I generally find female friends are better. Us blokes are a bit rubbish!
Future Learn sounds very interesting. I’ll look into that.
I used to take a lot of photos but I lost interest a bit with the advent of digital. And worsening MS. But I have got my film camera out, I’m just waiting for the rain to stop!
When did you get diagnosed if you don’t mind me asking?
You might say that; I could not possibly comment. 
Yes I think superannuationary sounds more cool, instead of calling myself a pensioner or beneficiary. 
I got dx relatively early in life, a teenager, but I still managed to find work as a holiday rep 
and later as a higher education administrator. 
The university I worked at has a charity number 
so maybe I can do my bit for charity and rejoin its choir, as I have plenty time on my hands now. 
Only problem is after a year of double covid and pneumonia and RSV (parainfluenza) 
, I doubt I still have the lungs 
for singing unfortunately.
JP
I loved my first camera - Yashica TL Electro which had a good lens. Easy and straightforward to use. Now have a Panasonic LUMIX bridge camera - I fool myself in thinking I can photograph wildlife and a bridge camera is much easier to carry around than telephoto lens. Many many years ago I had what I think was a Vivitar 400 lens - weighed a ton.
I was diagnosed 18 perhaps 19 years ago this coming December . Didnt really experience any significant/ noticeable symptoms for some 6 years or so.
P.S The other thing I’ve done, out of genuine interest, is research my family history. I used Ancestry UK % an online service. I did find it interesting- but also incredibly frustrating when looking up my Mother’s family . Her maiden name was ‘Smith’ of which as you might imagine there are an awful lot !
Apologies - another P.S. Thinking about my manual film cameras reminded me that I used to develop and print my films. Happy but sometimes disappointing times - what I thought might be a good photo often turned out to be somewhat less than impressive. No quick view and delete in those days, just another wasted film!
Myself excepted of course!
Hope the sun is shining with you today.
Yes I’ve looked at ancestry a bit. Not much came up although I already knew a fair bit about my mums side, and my dad’s too.
My dad does when I was young so I inherited his camera, which I still have in good condition. It’s a Minolta X300. And I used to have a darkroom too which I would lose myself in for hours. I loved it. I love the surprises that come out of a roll of film. In fact I might shoot one today, if the rain holds off.
I’ll slip another ps in! I was similar on the disease front, I think it was 7 years for me.
Blimey, you’ve had quite a year of it. Maybe the choir would be a good way of getting your lung strength back?
Better than shouting at people!